Address to the Lions Cabinet of District 20Y2
in the Capital Region of New York
By Lion Sue Shipe
I’m addressing you today to invite you to participate in what I believe to be a project of great importance. The International Institute For Human Empowerment, Inc., a not for profit charity registered with the State of New York, is planning its first in a series of Empowerment Seminars…….
I’d like to tell you why I believe this topic is vital to healthcare, business, and government:
Fibromyalgia is mysterious and has so far escaped the understanding of medical researchers and the entire medical community. We know some of its many symptoms. We know how it can change lives for the worse. We know that suffering is sometimes so great and so misunderstood that patients commit suicide. We know that it is unpredictable and disabling. We know that it sometimes accompanies other serious illnesses and sometimes appears alone. We know that it often appears to follow a traumatic event. And we know that some of the latest information seems to indicate that it is neurologically-based, changing the way our brains interpret pain signals, causing periods of cognitive impairment, and interrupting the life of the individual, and often of the family.
While social security only recently recognized it as a distinct entity, a diagnosis of only Fibromyalgia does not secure disability at this time, but may do so in the near future at a drastic cost to all of us in money, loss of time from work, suffering, and disruption of family life.
Why have I come to speak to you today on a topic different from the concerns of children and youth? Because children and youth are also affected, and because if millions of diagnosed Americans with some of the best healthcare in the world are still suffering, imagine the un-addressed needs worldwide of those without any access to pain relief and other assistance. Many of you will recall hearing of childrens’ “growing pains.” Today, it is thought that is Fibromyalgia. Children are even more likely to remain undiagnosed because for so long this was considered to be a woman’s issue, primarily caused by depression, or as many women have been told, “only in your head.”
Now that some research is beginning to find changes in the body’s interpretation of pain signals causing extreme pain in patients that others would not consider pain, we are beginning to listen, but we have far to go. Although the criteria for diagnosing Fibromyalgia was established in the ’90’s, many doctors don’t recognize it. The patient is often victimized twice, once by the illness, and again by her/his own doctor.
The product of the Empowerment Seminar on Fibromyalgia and Other Invisible Illnesses will be a White Paper-a document which will report the information shared by the patients, healthcare workers, doctors, legislators, educators, psychologists, social workers, and other service providers. It will cite research, propose recommendations, and will be broadly disseminated to Congress, the medical establishments, school nurses, parents, and others. It will help to:
Focus efforts toward addressing this illness
Expand funding for research, and
Teach us more about the many experiences of the patients with Fibromyalgia.
You can help us by supporting this critical effort….We will be happy to work with anyone who would offer to work with us to develop the considerable funding this requires. It is a major project addressing a major disabling illness. Won’t you help us today?
Lion Sue Shipe, Ph.D.
Executive Director and Founder,
International Institute For Human Empowerment, Inc.